My first year at university was difficult, but it was hard to explain why. When you leave home for the first time nobody tells you what "normal" looks like.

My condition (a genetic inability to synthesise collagen) has caused pain, muscle weakness, and immune system malfunctions for as long as I can remember, so it never occurred to me to mention how it worked.

I explained details of my diagnosis on all the relevant forms, but I forgot to describe my two hours of physiotherapy each day, or the three hours working with a carer to manage fluctuations in my ability to feed and dress myself. I didn't even think to mention the constant hospital appointments, which cut whole days from my working schedule. It was all just a part of life.

So when I had problems meeting my essay deadlines, or making it to lectures, I didn't know how to explain the problem. I just assumed everyone was being unreasonable, or that I was incapable of doing a degree.

My pain increased. Walking around college or sitting up straight in classes produced muscle cramps, and I became too exhausted to remember my physiotherapy routine. My new friends partied harder than I could ever keep up with, and I stopped sleeping.

As I became more unwell, I turned inwards. I stopped being able to articulate my needs, and my new care assistants became increasingly bewildered with their lack of instruction. My usual support network: family, friends, and an experienced care team were too far away. So there was nobody to check up on me and notice that I was slipping.

By the time exam period came around, my immune system was failing and I spent most of it stuck in bed. I knew I could have asked for time off or more support, but I was too poorly to make the phone call.

I also wasn't sure how much help I wanted. My college and the student disability services had been helpful, providing me with all kinds of allowances and pastoral care. But I had no idea how to manage the posse of note takers and library fetchers, with their relentless stream of emails and questions.

I was embarrassed by the fact I came with such an entourage, when all my friends seemed able to manage their own goals. It was becoming more and more apparent that I wasn't as "normal" as I thought I was. And I wanted to fit in. I didn't want to ask for any more special treatment, I just wanted to be me.

I failed my first exams spectacularly. People said I should have told them things were difficult. And for the first time I began to acknowledge that they were.

My second time round at uni things are a lot better. Before I came back, I sat down with my care team and family to paint a realistic picture of my condition and its impact, on my worst days as well as my best.

We typed this into a "rough guide to Abi," including tips for what to do to do during flare ups, along with a list of signs that I wasn't coping. We also worked out a realistic timetable of my day to day schedule and needs.

Through this, it became clear that studying at a "normal" pace wasn't an option for my body. My university doesn't officially run part-time courses, but we managed to come to an agreement where I study "full time, over a longer period."

Information about this option isn't stated anywhere, and I had to do a lot of digging to find out more about it. Many of my teachers couldn't believe that the university had agreed to it. But they're legally required to make reasonable adjustments to the course for medical reasons.

I also realised that living in college was not really suitable for my physical requirements. I want to be part of uni life, so I live nearby and make sure I schedule in time for hanging out and meeting people during the week.

Having a little bit of distance helps me to maintain perspective: my social life is important, but when I get home I've got time and space to factor in my physical needs. Studying over a longer period actually means I have a better social life: after my work is done I've still got a bit more energy to take part in hobbies and try new things.

The thing I've learned is to "ask and you shall receive". I had no idea that my needs were so unusual, but now I make sure I explain to each new supervisor exactly what my life looks like, so they know what to expect from me.

As a result, I spend less time in pain and more time enjoying my work. Routine is important: I make sure that each week I sit down with my care assistant and a member of my study support team, to talk about both my study schedule and my care and hospital needs at the same time. And of course, everyone has a copy of my "rough guide".

It also helps that I'm slightly older now. I'm not so worried about keeping up with a manic clubbing schedule, or the ever more panicky jobs race in a terrible market. As a result, my progress is different – I feel like I'm achieving what's right for me.